The tapestry of the life of a medically complex family

Archive for April, 2011

Spring Egg Hunt

Dressed for the quest:

 And they’re OFF!

Taking a basket for a spin

Happy Spring!



As friends have had babies, or gotten pregnant and are expecting, the topic of naming comes up. I find it fascinating the way people name their children- selecting for sound, flow, family history or meaning… People name their children for times of day, times of year, the weather of the day- all sorts of things go into naming kids across my friends & family.

My children all bear names to honor family members who have come before them. My eldest, Liam, is named for my mother’s father William. He was an engineer and a lover of music. My most fond memories are sitting next to him on the bench of his electric organ while he played complex melodies for all of us gathered in my grandparents’ living room. I remember the smells, the warmth… All of that went into naming ‘Liam’ as well as the meaning of the name, a good meaning for an eldest: ‘protector’. His middle name was chosen from a novel in which the hero’s name was ‘Conor’, meaning ‘lover of hounds’, and dogs are his favorite animal so it seems a great choice there too.

My children who have joined my family through adoption have names that bear meaning, as well as honor both their adoptive & birth families. My twins have names that share initials with my parents, ARK for my mother and TJK for my father. ‘Adrien’ arrived with the same first name, meaning ‘dark hair, dark eyes’ in Irish naming. I left her birth name with her and gave her ‘Rosa’ as a middle name to serve as a reminder of a strong African American female, Rosa Parks, who did not allow discrimination and unreasonable limitations define her life. This is a way of life I hope my daughter will be strong enough to emulate. ‘Tavish’ means Thomas, which was my Dad’s name, and ‘twin’ is its definition. ‘Joseph’ was part of his birth name and means ‘god will increase’ so I left it in his name to symbolize my hope for his unknown future. It seems he has risen to the name- being far more capable now than was anticipated at his arrival. I wanted their names to cement their relationship with my family as well as honor their heritage and beginnings.

When Keva was arriving, it was harder to come to a name. She was a beautiful baby and I worked hard to come up with a fitting name. ‘Keva’ is a variation of the Irish ‘Caoimhe’ [same pronunciation], meaning ‘beautiful’. Her middle name she shares with her biological great-grandmother, ‘Catherine’ [pure]. Her great-grandmother has adopted her oldest sisters and raises them nearby. We see them regularly. This woman is raising her third generation of family after raising the kids’ biol. mo., aunts & uncles when their mother died. She too is a strong and healthy role model for her great-grandchildren.

As I anticipate another arrival, I think of names which align with these above. I am working on names that share initials of my father’s sister, or my own sister. Naming will be either initials EPK or JAK. Names with positive messages and meaning are needed, to support this new one as she struggles to thrive here with her siblings in the future. OK all: you have your assignment. First name, middle name combinations, initials either ‘E.P.’ or ‘J.A.’  Thanks for your contributions- & kind words of support!


It’s a memory long gone, distant, nearly a “wives’ tale” in my history. Each day, multiple times, I run small compressors that nebulize medications into particles small enough to inhale. All night long I listen to the hiss and rumble of compressors as they neb water into mist to moisturize the air my twins breathe through their trachs. Alarms sound when heart rates plummet or rise and when oxygen saturation levels drop below a minimum acceptable level….

Throughout the day, when the heat is not running and I am standing far from the fridge, I remember the sounds of the world without motors running in the background. It is those times I hear clearly the laughter, the songs, the joy. The times my children add their voice to the cacophony, it endears all those other sounds to me; the harsh tones which allow my children to breathe & craft their own noise.